Tag Archives: Grief

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Maureen Has Passed Her Physical!

Mixed Dementia

The lab report on Maureen’s urine sample has shown that she does not have a UTI.  Her blood tests are all within normal limits and the swab on her mouth has shown no sign of fungal infection.  Her blood pressure, although slightly more elevated than normal, is not giving the G P any cause for concern.  He has suggested that unless she has any concerns monthly appointments for a general check up will be adequate in future.

Yesterday Maureen told Girl Friday that she is lonely:  she says she understands family members are busy with their own lives but she misses their company.  She generally shows a reluctance to travel to see them as she feels that they should be coming to see her.  I have no intention of persuading her to endure long journeys in her current condition; even though I know she is really missing one particular granddaughter at the moment. You would only have to see her waving with tears in her eyes as she watches Maeve on YouTube to understand what I mean:

Early this morning Maureen has woken up worrying about her medication as she says she’wants to get better’. I’m hoping that this is an opportunity for me to help her regain a semblance of confidence and independence through taking responsibility for her medication. I will keep you posted on how this goes!

Dementia: ‘I Want My Life Back’

Mixed Dementia

Image result for I Want My Life Back Picture

There appears to be a consensus on the need to cut us some slack and allow us to catch up with loved one’s next week.  I may be wrong and ‘Ginger’, as Maureen calls our Key Worker. will soon tell me this morning. He will be here at 10 ‘o’clock this morning; that will please Maureen as she is always keen he keeps a watchful eye on how we are doing.

There is an immediate point of concern in my opinion.   As Maureen put it on retiring last night ‘she hasn’t got a life of her own anymore, as she is being told what to do all the time’.  Maureen frequently says she ‘wants her life back’.  I fully understand why my very intelligent wife hates the loss of her independence.  That is one of the reasons I have been requesting a gathering of the Multi-Disciplinary Team.  Why should she have to wait for her concerns to be addressed and continue being treated in her words ‘as if she is stupid’.  My campaign for an immediate reflection on how she is being treated will continue.

You will be pleased to be reassured my cyber friend Kate Swaffer there remains no room for ‘Prescribed Disengagement‘ here!

Image result for Kate Swaffer picture

Dementia: Reliving The Nightmare

Mixed Dementia

I heard Maureen crying at 2 am this morning.  When I asked what was wrong she said: ‘I’ve been having a bad dream’.  Once again she was trying to work out if her only daughter was dead.  After a short while, she said ‘It’s true: she’s dead isn’t she’.

Music is one way of dealing with our grief this morning.

Denise loved Irish music so this one is very appropriate:

She was also was very fond of  Reggae, particularly this one from Bob:

The consensus of opinion is that Maureen’s dementia rules out grief counselling.   To an extent, I can empathise with Maureen’s loss as my first wife died at the age of 29 wasting away with cancer just like Denise.  I know that talking to Maureen about the happy times we spent with her daughter reminds her of a beautiful woman: a chip off the old block!

If distraction is needed this morning our weekly trip to Freeman Street Market should do the trick.  Maureen will be in her element as she chats to stallholders as we buy fruit and groceries for the week.  Then it’s on to Aldi to ensure the in-house chef that cupboards will be well stocked for his exploits.  Clee Medical Centre was excellent again yesterday, with an offer of an immediate appointment for Maureen’s troublesome mouth, which I declined to allow Sleeping Beauty to rest a while longer, so a swab will be taken on Monday.

Oh dear, it may not be the Market after all as Maureen is currently looking out of the window checking on ‘her car’ as ‘she wants to see her mother today’.  She is worried that  ‘if someone takes her car that she wouldn’t be able to go’: another Groundhog Day may be looming as Maureen has no recollection of her mum’s funeral.

Dementia: Withholding Bad News

General, Uncategorized, ,

Image result for Withholding Bad News Picture

There is no point whatsoever in giving Maureen any bad news: she has enough sadness in her life dealing with dementia.  Today is a particularly significant day in both of our lives.  It is Esme, my youngest daughter’s 29th birthday. I have already upheld my tradition and sung happy birthday to her in her absence – I do this whenever I remember it is someone’s birthday  There is no point in reminding Maureen that Esme wants nothing to do with me at the moment, and wouldn’t appreciate any form of contact.  However, when I get a quiet moment I won’t be able to resist listening to ‘Groovy Kind Of Love’ to remind myself of dancing with Esme in my arms when she was a baby:

Today is also the funeral of one of Maureen’s oldest friends.  When I received the sad news of Janet’s passing last week I mentioned our circumstances to her son and explained that attending the funeral was not an option.  There is no point in taking Maureen to events that would cause confusion, and lead to distress .

Maureen’s youngest son is visiting at the weekend.  It is his birthday a few days later. He is a Sunderland supporter, and we managed to snap up an appropriate polo shirt earlier in the year.  How fortunate that we will be able to have an early celebration of his birthday without reminding Maureen that she no longer has any concept of time, place or person.

I’m meeting Mel my Admiral Nurse this morning.   I need to chat over my responses to Maureen ‘wanting to go home’.  I also skimmed an interesting article yesterday that suggested trying to improve short-term memory is futile and focusing on the past might be more productive.  Such discussions will be academic unless I schedule regular respite into my schedule.  If I don’t look after my own well-being Maureen’s care will be taken out of my hands!

Dementia: ‘What Did I Do To Deserve This?’

General

Maureen was feeling very sorry for herself last night.  She became so upset that I encouraged her to go to bed at 8 ‘o’clock.  I had inadvertently brought about a spell of self-pity with my choice of music on YouTube.  Playing our Songbird reminded Maureen that two of her children had died.  She was almost inconsolable as she sobbed: ”Why me; have I been a bad person?’  I did my best to console her and assure her that she was not responsible for Kevin, and Denise dying far too young: her son at 4 months, and her daughter in her 50’s.

I have never heard Maureen go in for self-pity in the time we have been together.  She also said something along the lines of: ‘I meet a nice man and now I have got trouble with my leg’.  A reference to trouble with her left leg following stroke.

As she slept I  thought about a couple of things.  I just wonder if I can cajole Maureen into a trip to Coventry?  I deliberately put Maeve on YouTube to try to motivate Maureen to contact Denise’s daughter.  It doesn’t appear that communication is going to come from Coventry or that long promised visit.  I am trying to ‘nurse’ Maureen into a trip to Coventry.  At the right moment it might just evolve: just like Nottingham.   The other matter concerns the possibility of therapy about unresolved grief.

Any type of therapy is alien to Maureen:  with a predispositon for ‘flight’ she has always buried bad news.  Her solution is to scarper when things get too hot for her.  This is her approach to dementia with denial presented as: ‘I lost my memory once’.  Unfotunately, there’s no hiding place from. dementia..

I think it is worth seeing if we can create opportunities for Maureen to talk about all sorts of things.   I think I met  the woman for this job yesterday morning.

Dementia: Door Notes

General

I have read a number of books on dementia and talked to many people about my role as a carer for my wife.  It would be no surprise to any reader of this Blog to realise that my priority is trying to minimise distress.  Sometimes I get it wrong, misread situations, and my responses to M are unhelpful.

I also try to guide other people, relatives and friends, on the best way to support M. Again I often get that wrong and my good intentions are misunderstood.

Yesterday I read a post on Talking Point that has the potential to help anyone who has  involvement with this dreadful condition.    I have managed to get her permission to add it to this Blog:

Door Notes!

I had spent almost 2 solid weeks of dementia around the New Moon and then sometime later I was better for several days straight! Oh Happy Days were back! I did a lot of deep thinking, because some of our 4 adult children are clueless on what to do. They ask questions (I have no answers when I’m “bad off”) and so they avoid us. (My opinion.)

This is what I came up with and taped it to my bedroom door so when you enter you can’t easily miss it. I left space where I or they can add more:

NOT IN RANDOM ORDER:

Don’t ask me if I have taken my meds or vitamins. Bring me water and them (IF) you know for certain that I haven’t, or that I need another one, now.

Distract me with something else. Even if it is just “busy work”. This may last well for 10 minutes or 2 hours then come up with some other distraction.

Have a list made up for distractions that have worked, that you’ve heard or thought of but haven’t tried.

Take your loved one a drive. (my favorite help)

Have your loved ones favorite funny movie to watch: over and over and over if necessary.

Don’t ask me any questions! None!

Let me talk if I want and DO NOT interrupt me while I’m talking even if I am not making sense or have the wrong word or name.

Let me wander around the house, or certain safe areas.

Let me cry.

DO NOT tell me that I “CAN’T” do any of the above. They may not seem to you to help but they DO help me! But if you can distract me into doing something else that is GREAT!

I may want to be alone: perhaps in my room. Or just alone while everyone is around me!

As a last result, for me, at this stage is, hold me and assure me that it will end. LIE TO ME!

This is THE most important thing I discovered when searching my mind: I am “homesick” for ME! I am all too aware in my most worst demented state, that I am not who I was. I may be homesick for my childhood and parents, pets, home. Or for being a Mommy to my babies. Or homesick for who I was in my career. Etc. I wander around; cry; search for ME! And you, my love, may never have even known the ME that I am homesick for, because we had never met then!

I hope this helps, I think it did my children. Jaffy

Dementia: Unresolved Grief

General

I’m on the case early this morning trying to edge things in a positive direction.  What else can you do when your wife tells you she is fed up with not being able to do things that other people can do?  I didn’t think this was one of those occasions when changing the subject or diverting attention was the answer.  So I went for it and provoked further discussions on her aspirations.  It is possible, that once again, I misread her thoughts as it appears to have been a grief related aspiration: wanting to see her mother.

It is interesting that yesterday morning my wife was on a similar wave pattern.  She explained to me that she hadn’t slept well the night before because she had been thinking about her daughter who passed away a couple of years ago.  She was distressed that she couldn’t remember what D looked like and she found that really upsetting.  I listened for a while, shared experiences of my own, and talked of the happy times we had spent together.  I also reminded her of the photos that we had of D that could remind us of what a generous person she was.  I think I may have been closer to the mark yesterday.  Now I have an idea of what might have been going on this morning.

I think that M wakes up in the morning aware of the curse of dementia.   Perhaps her safety net is to focus on unresolved grief and there is a lot of that around..  Daily grieving becomes part of her psyche because she doesn’t know how to deal with the consequences of stroke: she just can’t bear to come to terms with it’s legacy. Some people would suggest that such denial is unhelpful.  However, I don’t think that taking steps to encourage her to face reality at this moment in time would be helpful.  For the time being working with my wife’s reality can only minimise distress and that remains my prime focus.